PART ONE BY LAUREN AGORATUS
INTRODUCTION
I wrote this manual to help other families of individuals with special needs and the professionals who work with them. My daughter now has five life-threatening conditions, and autism just to keep things interesting. We have been through everything from early intervention to currently going through transition to adult care. I hope this helps you on your journey.
EARLY & CONTINUOUS SCREENING
Families may be concerned that their child isn’t doing what they should be by a certain age. One of the Maternal and Child Health Bureau (MCHB) six core outcomes for children with special needs is, “Children are screened early and continuously for special health care needs.” There are excellent checklists for parents available from the Centers for Disease Control & Prevention “Act Early” at www.cdc.gov/NCBDDD/actearly/milestones/index.html Bright Futures, the American Academy of Pediatrics’ health promotion website, has “What to Expect & When to Seek Help” at www.brightfutures.org/tools/ Families should bring their concerns to their pediatrician as parents are often the first to notice. Pediatricians also have screening tools that can help decide if more evaluation is needed to make a diagnosis, or they may make a recommendation to a specialist. The American Academy of Pediatrics (AAP) has recommendations for developmental screening at www.aap.org/en-us/about-the-aap/Committees-Councils-Sections/Council-on-Children-with-Disabilities/Pages/Description-and-Policy.aspx. If the pediatrician has a “wait and see” approach, the family could continue to express their concern or perhaps request a referral. First Signs has tips on having a discussion with the pediatrician at www.firstsigns.org/concerns/if.htm Families can also suggest to their pediatrician/family practitioner that they review the resources and recommendations from the AAP including those found on the AAP’s National Center for Medical Home Implementation at www.medicalhomeinfo.org/ This website includes a section on evidence-based guidelines and screening resources at www.medicalhomeinfo.org/how/clinical_care
DIAGNOSIS
When families are just getting a diagnosis, they need information on the condition and emotional support. Exceptional Parent magazine has an annual resource guide that lists all the national organizations for specific conditions at http://digital.turn-page.com/t/99327 (click on preview, then archived.) For detailed information including research, databases, literature, etc., the Maternal & Child Health Bureau (MCHB) has “Knowledge Paths” on some conditions at www.mchlibrary.info/KnowledgePaths/index.html and resources for families at www.mchlibrary.info/families/index.html The National Dissemination Center for Children with Disabilities information on specific disabilities can be found on the Parent Center Hub website at www.parentcenterhub.org/repository/specific-disabilities/ or Spanish http://www.parentcenterhub.org/repository/aprendizaje For emotional support, there are matching groups like Parent-to-Parent and Friends Health Connection. Other good resources on specific conditions are:
Health A-Z: Health Central
www.healthcentral.com
Health Conditions: WebMD
www.webmd.com
Health Conditions & Diseases – Health Finder: U.S. Department of Health & Human Services
www.healthfinder.gov/HealthTopics/Category/health-conditions-and-diseases
Spanish http://www.healthfinder.gov/espanol/ click on Recursos de salud
Health Issues: Conditions – American Academy of Pediatrics – information for families
www.healthychildren.org/English/health-issues/Pages/default.aspx
Spanish www.healthychildren.org/spanish/health-issues/paginas/default.aspx
Health Problems – Kids Health
http://kidshealth.org/kid/health_problems/
Spanish http://kidshealth.org/kid/en_espanol/index.html?tracking=80002_F#cat20289
(click on Las Enfermedades)
Health Topics – Medline Plus
www.nlm.nih.gov/medlineplus/healthtopics.html
Spanish www.nlm.nih.gov/medlineplus/spanish/healthtopics.html
Developmental Disabilities – Medline Plus
www.nlm.nih.gov/medlineplus/developmentaldisabilities.html
Disabilities – Medline Plus
www.nlm.nih.gov/medlineplus/disabilities.html
EXPLAINING THE DIAGNOSIS/SELF-AWARENESS
Families will often know when their child is ready to find out about their diagnosis because their child starts asking questions. Children may ask, “Why I am I different,” or “Why is it so much harder for me to do things?” Sometimes children may just want to know what something is called, other times they may want their parents to explain what it means. Families can start with children’s books that explain certain conditions. Children need to understand that they are not “better or worse,” simply different. They should also explain that a diagnosis doesn’t define their life or their future. There is good information, including explaining the diagnosis to the child, from Kids Health at http://kidshealth.org/parent/medical or in Spanish at http://kidshealth.org/parent/en_espanol/index.html Physical or visible disabilities can be easier to explain and to understand for children (and even adults). Cognitive disabilities, autism spectrum disorders, and learning disabilities may be more difficult to explain and understand. Families may want to discuss their child’s condition privately until they are ready to understand. Once the child is aware of their diagnosis, it’s easier to be more open. It’s almost like the “sex talk.” If parents pay attention to their child, they will know that their child is ready. Families can figure out exactly what the child is asking and how much they need to know. For older children there is a publication called Accepting My Disability at www.going-to-college.org/myplace/disability.html
Sometimes families think they are protecting their child by not telling them about their disability or special healthcare needs. Unfortunately, this places their child at a disadvantage because they do not learn how to understand their disability or advocate for the accommodations and supports that they need. Explaining the diagnosis is one of the first steps toward building the selfawareness and skills needed for independence.
EARLY INTERVENTION
Early Intervention is a system that serves children from birth to three who have disabilities or developmental delays. In NJ, there is a family “cost sharing” for services for families whose income is up to 350% of the Federal Poverty Level (FPL). However, services that are at no cost to families include Child Find (identifying and referring a child), Service Coordination (similar to case management), Evaluation & Assessment, IFSP (Individualized Family Service Plan) Development and Review, and Procedural Safeguards (e.g., parent consent, complaint resolution, etc.) The NJ Early Intervention System (NJEIS) information can be found at www.state.nj.us/health/fhs/eis/index.shtml There are also “Regional Early Intervention Collaboratives” which are nonprofits that “plan and coordinate the state’s early intervention system at the regional/community level” and can be found at www.njeis.org The National Dissemination Center for Children with Disabilities excellent overview of early intervention can be found at the Parent Center Hub website at www.parentcenterhub.org/?s=early+intervention or Spanish www.parentcenterhub.org/?s=intervencion+temprana
CHILD CARE
Families of children with disabilities need to know that a child care provider can accommodate their child appropriately. The Inclusive Child Care Project (NJICCP) works to increase inclusion of young children with special needs in child care centers and other typical early childhood settings and can be found at www.spanadvocacy.org/content/inclusive-child-care-project (English/Spanish).
There are also statewide resources listed by the Map to Inclusive Child Care Team at www.state.nj.us/humanservices/clients/family/special For children who are medically fragile, NJ has Pediatric Medical Daycare at http://web.doh.state.nj.us/apps2/healthfacilities/fsSearch.aspx Families can also add an Individual Health Plan to an IEP/504 plan that could include afterschool care at www.spannj.org/Family2Family/individual_health_plan.htm If the district runs an afterschool program, they should accommodate children with special needs. Most families don’t know their child’s rights (for example, they do not need to be potty trained) or the responsibilities of child care providers. There is an excellent factsheet on what is legally required at www.state.nj.us/humanservices/clients/family/special/10_ChildCare_NJLawAgainstDiscrimination_columns%20.pdf
GENETICS & RARE DISORDERS
Learning about and understanding how genetics affects their child’s condition may help families feel as if the child’s symptoms finally “have a name.” Genes in Life explains the basics of what genetics means for families at http://genesinlife.org/genetics-101/why-learnabout-genetics Another good resource is the Genetic Alliance which has a variety of information including “Children and Youth with Special Healthcare Needs in Healthy People 2020: A Consumer Perspective” at www.geneticalliance.org/publications/healthypeople If parents find out that their child has an unusual condition, there is good information available from the National Institutes of Health at http://rarediseases.info.nih.gov There is also a searchable database available from the National Organization for Rare Disorders at www.rarediseases.org/rare-disease-information/rare-diseases For chromosomal disorders, there are descriptions of genetic testing and conditions available from Unique at www.rarechromo.org/html/ChromosomesAndDisorders.asp There is even information on organ transplants for children with developmental or other disabilities at http://rwjms.rutgers.edu/boggscenter/products/documents/TransplantPampletFINAL6-11.pdf
If families know ahead of time what to expect, they can take better care of their child, and the child will reach their personal best potential.
ACCESSIBILITY
After Medicaid managed care was mandated for the ABD (aged, blind, disabled) population in NJ, accessibility became an issue. Patients with disabilities were not able to physically access doctor’s offices whether it meant lacking wheelchair access ramps to get through the front door, assistive devices to get on the exam table, etc. However, accessibility goes beyond the physical. For example, there should be interpreters available when needed, whether it is for someone with a hearing impairment or who speaks English as a Second Language (ESL). For more on interpretation, see also the section on Cultural Competency. There is an excellent guide from the Office of Civil Rights called “Access to Medical Care for Individuals with Mobility Disabilities” at www.ada.gov/medcare_mobility_ta/medcare_ta.pdf Beyond physical access, the Equal Rights Center has a “Healthcare Accessibility Toolkit” at www.equalrightscenter.org/site/DocServer/Accessible_Healthcare_toolkit.pdf?docID=2181 Families need to know that accessibility is simply a civil rights
issue.
ADVOCACY
Beyond exercising their civil rights to access healthcare, families may need to further advocate for their child as well as themselves. For example, they may need to insist on family support services to help maintain their child at home. Family Support Services range from home or vehicle modification to respite, which is a break for family caregivers from what could be 24 hour care. According to the Caregiver Action Network, more people enter institutional care due to caregiver burnout than deterioration of their condition. The “Health Care Advocacy Across the Lifespan” booklet by the Statewide Parent Advocacy Network and Hinkle, Fingles & Prior Law Firm is a good starting point and can be found at www.equalrightscenter.org/site/DocServer/Accessible_Healthcare_toolkit.pdf?docID=2181 There are other advocacy tools throughout this manual in the categories under which they fall.
SELF-ADVOCACY IN HEALTHCARE
In addition to advocacy by families, children with special needs will learn how to advocate for themselves. One of the easiest things families can do to foster self-advocacy is to give their child choices. It can be something as simple as asking a toddler or preschooler which outfit they would like to wear, or asking an older child if they would like to do math or spelling homework first. If a child doesn’t have a choice regarding getting an injection or lab work, the family can instead ask the child which arm they would prefer to have the work done on. The Wyoming Council on
Developmental Disabilities’ coloring book for children can be found at http://ddcouncil.state.wy.us/KidsCRSpring12.pdf For older children and self-advocates the National Gateway to Self-Determination has “It’s My Future” at http://ngsd.org/sites/default/files/its_my_future.pdf or the iPad app www.ngsd.org/news/its-my-future-ipad-app They also have “My Health, My Choice, My Responsibility” which includes forms for health information, health plans, and appointments as well as an iPad app at www.ablelinktech.com/myhealth The National Institute on Disability and Rehabilitation Research has “This is Your Life! Creating Your Self-Directed Plan” which also includes mental health resources and is available at www.ngsd.org/news/my-health-my-choicemy-
responsibility-ipad-app.http://www.cmhsrp.uic.edu/download/sdlifeplan.pdf Other relevant resources include:
Healthcare Frequently Asked Questions: Self Advocacy Series – Disability Rights NJ
www.drnj.org/pdf/drnj%20FAQs%20healthcare%20final%20version%20for%20web.pdf
Being a Healthy Adult: How to Advocate for your Health and Healthcare – Boggs Center on Developmental Disabilities (NJ) in English and Spanish and read aloud
http://rwjms.rutgers.edu/boggscenter/products/BeingaHealthyAdultHowtoAdvocateforYourHealthandHealthCare.html
My Health Passport – University of South Florida – AUCD
http://flfcic.fmhi.usf.edu/docs/FCIC_Health_Passport_Form_Typeable_English.pdf
or on the SPAN website at www.spannj.org/cyshcn/core_outcome_6/Health_Passport_English.pdf
Spanish http://flfcic.fmhi.usf.edu/docs/FCIC_Health_Passport_Form_Typeable_Spanish.pdf or on the SPAN website at www.spannj.org/cyshcn/core_outcome_6/Health_Passport_Spanish.pdf
Health Issues: Conditions – American Academy of Pediatrics – information for families
www.healthychildren.org/English/health-issues/Pages/default.aspx
Spanish www.healthychildren.org/spanish/health-issues/paginas/default.aspx
Speak Up Guide University of Alaska – AUCD
www.uaa.alaska.edu/centerforhumandevelopment/selfdetermination/upload/Speak_Up_Guide.pdf
STIGMA/PEOPLE FIRST LANGUAGE
In addition to cultural competency, there must be no stigma for physical and mental health conditions. People first language means the person comes first, then the description. It wouldn’t be said that someone is cancer, but rather that they have cancer. The disease does not define the person. Further, biologically based mental illness is just like any other physical condition. An individual with diabetes would not be blamed for their illness or for the use of medication to treat it. Mental illness is like any other illness except the organ affected just happens to be the brain, which symptoms manifest as behavior. There is an appropriate way to talk with and about people with disabilities. For example, children with special needs should think of themselves as “differently abled.” A variety of resources are listed below:
Disability Etiquette – United Spinal Association (variousdisabilities)
www.unitedspinal.org/pdf/DisabilityEtiquette.pdf
People First Language – Disability is Natural
www.disabilityisnatural.com/images/PDF/pfl09.pdf
Spanish www.disabilityisnatural.com/images/PDF/pfl09spanish.pdf
People First Language – Self Advocates Becoming Empowered
www.aucd.org/docs/People%20First%20Language%20Manual.pdf
Stigma: Language Matters – MD Mental Hygiene Administration
www.onourownmd.org/wp-content/uploads/2011/12/LM-Flyer-Artwork207.pdf
Those of Us DisLabeled
www.hdi.uky.edu/Media/Default/Documents/DisLabeled.pdf
Editor’s Note. A GPS for Families of People with Special Needs, Part II will appear in next month’s issue of EP magazine •
ABOUT THE AUTHOR:
Lauren Agoratus, M.A. is the parent of a child with multiple disabilities who serves as the Coordinator for Family Voices-NJ and as the central/southern coordinator in her state’s Family-to-Family Health Information Center, both housed at the Statewide Parent Advocacy Network (SPAN) at www.spanadvocacy.org
